I Bet You Haven’t Heard Of Ehlers Danlos Syndrome (Eds)
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One in about 2,500 people has EDS and most people with EDS dont know it. How is this possible?…
How is this possible?
EDS is a connective tissue disorder that is almost invisible to even the trained eye. It presents as extremely widespread symtoms like chronic pain, gastrointestinal issues, partial and full joint dislocations, memory loss, comprehension issues and many more! Any given person has quite a number of symptoms and everycase is different!
As doctors cannot see connective tissue many EDSers get diagnosed with fibromyalgia and/or chronic fatigue syndrome.
It takes a very expensive, rarely available genetic test or a well versed geneticist to see EDS in a patient.
I have Ehlers Danlos Syndrome and im trying to help people with this condition to be properly treated and diagnosed.
Occassionally i am able to do some photography to show some of our invisible pain and raise awareness for all people with EDS.
I have been working on this for less than a year but hope that with awareness will come better research and treatment for patients with Eds. Please note the bruising is makeup to show the pain of an individual with EDS and while easy bruising is a symptom you don’t need to show such violent bruising to have EDS.
More info: Fb.com
90% of people with EDS are female
EDS feels like living the day after a car crash every day
Our bodies efforts to hold everything in place can lead to pain and even hospitalization
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Cause apparently doctors who treat patients forget that literature contributes towards being adequately informed....thought I'd help out a lil bit ;)
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these are not guidelines, these are studies.
The comment about an eds place in australia.... do tell where that is as I live in australia and have been told to move YES MOVE to London no less as NO ONE treats eds in australia.
Hi Christie, I attended an International Conference on connective tissue disorders in Australia a few years ago. There is definitely a specialist clinic in Australia but it is restricted to paediatric care in one state (cant remember which). Get in touch with the CTD Foundation. The conference was a great source of info from sufferers as well as geneticists, and all manner of specialists in autonomic dysfunction, physiotherapy, dieticians etc. Are you on any of the Facebook EDS groups?
We have one or two doctors who are competent in Australia - Chris O'Callahan who is more known for his work in autonomic disorders however has extended into Ehlers danlos and supposedly a Rheumatologist in Brisbane who happens to have cEDS himself. But only treats paediatric cases. There is a marfans clinic in Brisbane but it is not open to Ehlers danlos :/. Basically we are stuck with not much.
the problem is that your population is too low for that. Europe is way wealthier and has more population, therefore treatment for rare diseases are easier there.
>goes on rant about how easy EDS is to diagnose >links to site that has an "it's our time" campaign because Ehlers Danlos patients have long been neglected >ignores that embarrassing faux pas yet criticizes every other link offered >claims to be able to test for hEDS yet can't back this up with sources >continues to criticize offered links I'm actually embarrassed for you.
(1) i never claimed that we can test for hEDS, that would be nonsense to claim. (2) it is sad to see that a lot of you people with the disease did not get diagnosed in an appropriate time frame (3) i am angered by amateur kickstarter campaigns not linked with any medical association to back them up or to guide money where it should be. and it should not be in a private photostudio on the gold coast
"We first start out with a skin biopsy. ALL Ehlers danlos mutaions show deficiency in collagen production. that is a screening test." 1?
If that's what you're actually mad about why are you flailing your arms around like a child about this, that, and the other thing? And we're all free to give our money how we see fit. We don't need you to police it. If I want to give to a fellow zebra that is trying to raise money for a wheelchair, I can. If I want to give money to someone raising EDS awareness that needs funds to do so, I can. And if I want to give money straight to The Ehlers Danlos Society, I can do that, too. Why the hell do you care? You need to go meditate or something. Jeez.
well..a screening test is not a diagnostic test.
Cause apparently doctors who treat patients forget that literature contributes towards being adequately informed....thought I'd help out a lil bit ;)
This comment is hidden. Click here to view.
these are not guidelines, these are studies.
The comment about an eds place in australia.... do tell where that is as I live in australia and have been told to move YES MOVE to London no less as NO ONE treats eds in australia.
Hi Christie, I attended an International Conference on connective tissue disorders in Australia a few years ago. There is definitely a specialist clinic in Australia but it is restricted to paediatric care in one state (cant remember which). Get in touch with the CTD Foundation. The conference was a great source of info from sufferers as well as geneticists, and all manner of specialists in autonomic dysfunction, physiotherapy, dieticians etc. Are you on any of the Facebook EDS groups?
We have one or two doctors who are competent in Australia - Chris O'Callahan who is more known for his work in autonomic disorders however has extended into Ehlers danlos and supposedly a Rheumatologist in Brisbane who happens to have cEDS himself. But only treats paediatric cases. There is a marfans clinic in Brisbane but it is not open to Ehlers danlos :/. Basically we are stuck with not much.
the problem is that your population is too low for that. Europe is way wealthier and has more population, therefore treatment for rare diseases are easier there.
>goes on rant about how easy EDS is to diagnose >links to site that has an "it's our time" campaign because Ehlers Danlos patients have long been neglected >ignores that embarrassing faux pas yet criticizes every other link offered >claims to be able to test for hEDS yet can't back this up with sources >continues to criticize offered links I'm actually embarrassed for you.
(1) i never claimed that we can test for hEDS, that would be nonsense to claim. (2) it is sad to see that a lot of you people with the disease did not get diagnosed in an appropriate time frame (3) i am angered by amateur kickstarter campaigns not linked with any medical association to back them up or to guide money where it should be. and it should not be in a private photostudio on the gold coast
"We first start out with a skin biopsy. ALL Ehlers danlos mutaions show deficiency in collagen production. that is a screening test." 1?
If that's what you're actually mad about why are you flailing your arms around like a child about this, that, and the other thing? And we're all free to give our money how we see fit. We don't need you to police it. If I want to give to a fellow zebra that is trying to raise money for a wheelchair, I can. If I want to give money to someone raising EDS awareness that needs funds to do so, I can. And if I want to give money straight to The Ehlers Danlos Society, I can do that, too. Why the hell do you care? You need to go meditate or something. Jeez.
well..a screening test is not a diagnostic test.